BAD side effects with HUMIRA - HELP!

I have Crohn's disease and started taking Humira in June 2013 after Remicade didn't work well for me. I built antibodies against Remicade and the side effects were horrible. After I started Humira everything was fine for a few months, but then I started to get the same side effects as I had with Remicade. The side effects are severe joint pain along with joint swelling and sometimes I get fluid in my knee which makes it almost impossible to walk.

My rheumatologist kept saying it's arthritis, but I didn't have arthritis before starting any of these meds. I've been off Humira for 6 weeks now and still having these awful side effects. I recently took a MRI on my wrist to determine if I have arthritis and still waiting for those results.

What doesn't make sense to me is I'll have joint pain and swelling in one wrist for a few days, then it moves to the other wrist, then random fingers will swell, then the tops and bottoms of my feet will swell...it just travels and it doesn't make sense that this could be arthritis. The swelling is never in just 1 area all the time - It always changes.

Has anyone else experienced these side effects before? And if so, did they ever go away? I'm desperate for some advice here! Thanks in advance for your replies.

i had the exact same side effects from remi but WAY WORSE on humira. humira has been the hardest drug by far for me (i have UC but figured i'd comment anyway). the joint pains and swelling were terrible. mine went away about a month or two after i stopped it. i am on simponi now and have had zero of these pains... which is strange since it's almost the same thing as remicade and humira.

i definitely know how you feel. my hands/wrists/fingers/ankles were the worst. it hurts just thinking about it.

ava, the pain lessened as the drug got out of my system. it was very strong at first like i wouldn't be able to move my hand/fingers/wrist for about 8 hours. it was just frozen and if i attempted to bend it, it would really hurt. i always described it as punching someone in the face where your hand is stuck in that "ouch" position.

i've had neuropathy for years now. started when i was in the hospital a few years ago on so many drugs (pred, 6mp, remicade,flagyl, cipro). it's stayed with me and has traveled to my hands, lips, chin sometimes. i called an ambulance once because i was worried i was having stroke- numbness happened in left side predominantly. certain drugs make it worse like 6mp and vancomycin.

aww yeah. have as much fun as you can on vacation!!! it sucks you have to deal with this but that's just what comes with the meds we try. i hope it's not permanent in your case. i don't know what i would've done if the joint pains stayed. the neuropathy has never gone away so i just avoid the meds that make it worse.

that's what's nice about talking to others on here. at least one of us has had the same problem so you know you're not crazy!!

prednisone has been GREAT for my symptoms... which is good and bad haha i am terrified to get off of it. it's always a test to see if the maintenance med is working as you get off pred. i'm on simponi and imuran now so i'll be stuck if i can't get off pred.

Avalove, you sound exactly like me.

I was on Remicade from August 2011 to August 2013. I developed awful joint pain and random swelling as of April 2013. I continued on with the Remicade even though I saw my primary doc and my gi and then the infusion people trying to figure it all out and they said arthritis, migratory arthritis, gi said arthralgias, and I was just frustrated and I could not hardly walk!

My gi had me try Sulfasalazine (didn't work) and then my tried and true Entocort for the swelling and pains. The steroid didn't even work.

Remicade worked for the Crohn's. I just knew something was wrong. I had to figure it out on my own I guess.

I started on Humira after seeing a rheumatologist who told me I have arthritis....and wanted me to try Cimzia and all this other stuff (if Humira didn't work). I began Humira in September 2013 and have been on it ever since. It took a good couple/few months for my body to go back to normal from the Remicade reaction. I sometimes have swelling in my thumb joints but it's nothing like it was before and it goes away quickly and it's not nearly as debilitating as it was.

My symptoms, at the height of this, included: both hands swelling on the backs either at the same time or a few days with the left then the right (looked like a blown up doctors glove). I would have half of my fingers on one or both hands swell or alternate swelling. Then my wrists. Then my elbows. Then my knees. Then my feet. Oh boy did my feet swell! I couldn't fit them in any kind of shoe. It was awful. I had so much trouble walking. I would come home from work, which is a desk job, and not be able to walk anywhere in my house. This ruined my summer last year. I am praying the Humira doesn't do this to me otherwise I will be very sad since the Humira is working for the Crohn's.

My arthritis is in my spine, so when I developed small joint pain and swelling when on Humira I was concerned. After having a severe immune reaction and stopping Humira, the pain went away. Then I tried Simponi - and the pain came back. The pain went away, so then I tried Simponi and the pain came back. My Rheumatologist decided to run blood tests and it was confirmed each time I had drug-induced Lupus. I can no longer take biologics. I would suggest you get tested for drug-induced Lupus. I was lucky that once the drugs were stopped, the Lupus went away, but there are known cases where it doesn't go away.

Ava has your joint pain finally gone ?? I have EXACTLY the same as youre describing ... thank you xx

I know this posting is older but I feel the need to worn anyone I can about biologics like humira and enbrel. I have undifferentiated AS and struggled with it for years. Was prescribed humira in the spring of 2009 and it worked wonders at first. I had virtually no pain within three days after taking my first injection. Fast forward five months and I became severely ill but all tests came back normal. I stopped taking at that time but I continued to feel very ill. It didn't help that my pcp didn't listen to me but I insisted on a sputum culture bc I was heavy chested and coughing. Turns out I had klebsiella pneumonia and was put on an antibiotic. I felt a little better afterwards but continued to feel fluish. Within a few months I developed thrush, fungal infections in toenails, and incessant diarrhea. I was again having copious amounts of sputum and tested for fungus this time. It came back positive for candida albicans and was put on antifungals. They did not help and did not kill the infection. Fast forward to today and I am completely disabled because of this infection. It is drug resistent and will have to live with it for the rest of my life. I still struggle with AS on top of the chronic infection caused by humira. I can't sue Abbotts labs because no lawyer will even consider it bc they are a multi-billion dollar company with a team of lawyers at their disposal. A side note: recently my wife's friends mother took humira for a few months and ended up with multiple malignancies and passed away within weeks of being diagnosed. The thing you have to remember is that those who died from these drugs have no voice and cannot tell you what I am now. That these drugs are no joke. Please do not take them bc you run the risk of many complications. You do not want to live with the pain of infection or worse on top of the symptoms from your autoimmune disease.

I was on Humira for 2 years before I had any side effects. Severe joint pain in knees, ankle, wrists. My knees were swollen to the point I couldn't walk. I also developed medication induced lupus. I stopped the Humira in December 2014. Still having problems with joint pain and swelling. I also developed pneumonia 2 months after stopping Humira. I also have been having lower lip swelling with cold sores and my memory is not anywhere near what it was.So, I've been on prednisone since may, getting ready to start Entyvio infusions tomorrow if they can work me in.

Yes strat, but like I said, the risks are generally low, I realize they can happen to anyone but again, the risk of the damage inflammation is doing really is no better, so in essence, we're darned if we do and we're darned if we don't.

Hi daffodil99, welcome to the forum. You might want to make a new thread and introduce yourself. Since you posted on an old thread, many people might be skipping your post.

Unfortunately joint pain and arthritis-like pain are somewhat common with Crohn's disease. The arthritis usually flares up when the bowel inflammation itself flares up; and when the bowel inflammation is treated and under control, the joint pain *usually* improves as well.

So it's best to find a med that works for the bowel inflammation, and hopefully that will help with the joint pain as well. It's a good idea to include a rheumatologist if you have IBD-associated arthritis.

But I worry that your GI started you on Lialda. That tells me your GI isn't up to date on IBD treatment. Lialda is approve for mild to moderate ulcerative colitis, but it was never approved for Crohn's disease. Many doctors who don't know better mistakenly assume it it helps UC, it will also help Crohn's. But research has shown that is not true - it just doesn't help Crohns.

So you need to be on something else (a different class of medication altogether). And maybe you should see an IBD specialist, because I worry your GI is in over his/her head.

You are probably a patient who should be on immumomodulators at a minimum (drugs with names like imuran, 6-mp, or methotrexate), and you might even be an appropriate candidate for biologics like Remicade or Humira.

Again, I think you should seek another GI if possible.